30th April 2013

One of our church friends came to visit Charlene and shared with me something that I could not believe. He met a client for work in the morning and told the client he was not free to meet in the afternoon as he was going to NUH to visit a 4 year old friend. And the client asked "Is it Charlene?" Wow. The client is a friend of one of the special mum in my support group. I seriously think half of Singapore is praying for Charlene. 

We do not know the number of churches nor all the people praying for Charlene. But we thank God for sending all these loving people who stood by us in prayers. We also thank our church YMM for all the support (prayers, financial, food) that they have given. So blessed are we that for a whole week, all our meals are provided by friends. 

While our hearts are in pain seeing how Charlene suffer, we continue to trust in God for deliverance and believe that the plans our God has is to prosper us and not to harm us. 

29 April 2013

Charlene is so loved by many people. My friend's husband took time-off specially to visit Charlene. He had tears in his eyes when he saw Charlene and said that his heart very pain. We have no idea how Charlene can touch the hearts of so many people. It is perhaps a gift that God has given her. We are praying for this uncle who loved Charlene so much that he will come to know our Lord Jesus Christ who love us and Charlene and him too.


A lady from our cell group told her friend to pray for Charlene and this friend brought along a pastor who has the gift of healing to pray for Charlene. Upon hearing that we are from Yishun Methodist Mission, Rev Cecil shared of how YMM was very much involved in the fundraising of his ministry in South Africa. God sure has his way of using people.

25 Apr 13

At 330am in the morning, a junior doctor came running out to the waiting area & informed us that Charlene heart stopped and they managed to revive her after 20 minutes of CPR. The 2 of us were so affected as we waited outside her ward speechless.

Meanwhile, God has been sending brothers and sisters in Christ non-stop. They include our church mates, the special mums support groups and even strangers to come and pray for Charlene and us.

One of my friend's friend (Deborah) heard about Charlene's condition and felt compelled to visit and pray for Charlene. That was my first time seeing her face to face. Deborah also brought a man along with her to pray, which i assumed is a pastor.

After praying for Charlene, the man asked Deborah to take down his number and update him on Charlene's condition. He said he will pray for Charlene 3x a day. Then he said something that stunned me and Deborah "Don't worry, I have not seen death on her (Charlene's) face. " He explained that he had seen death before, and know when the patient was dying or not; if the patient was dying, he would no longer pray for recovery but pray for other things instead.

After the man left, Deborah told me that the man was a stranger that she just met. She was talking to her maid in a taxi about Charlene's condition, when the taxi driver overheard the conversation. The taxi driver quoted her a Bible verse and asked for more details so that he can pray for Charlene. When the taxi reached NUH, Deborah asked the man whether he wanted to come along and pray for Charlene. The man readily agreed.

Deborah was as shocked by the man's parting words as I was. She kept apologising to me worried that the man's actions may have offended me. I reassured her that i'm ok.

When i recounted the story to Des, he was very touched by the man's actions and words. He felt that the man must be an angel sent by God to remind us to trust in him. We decided that we would give Charlene as much time she needs to recover.

24 Apr 13

The doctors called us for a conference. They explained to us that Charlene's condition is worsening due to the poor lungs functioning, and the lack of oxygen in the blood. This increases the risk of the heart stopping. They wanted us to decide whether we want to resuscitate her if the heart stopped. They advise us that Charlene condition is expected to worsen across the days and resuscitating her is prolonging the inevitable.

Both of us cried and were lost as to how to make such a decision. Des didn't want to see Charlene suffer, but we didn't tell the doctors about our decision at all.

23 Apr 13

Des and I rushed back to NUH in a cab at 12 midnight. We were shocked to see Charlene with many tubes and probes inserted into her small body. She needed to be put on the respirator and have many lines all over her. It was a sight we were familiar during her NICU days, but this time it is more serious. Charlene was on 100% oxygen support.

The ICU doctor told us that Charlene lungs is very weak now, and they need to give her as much support as possible now while we wait for the lungs to slowly recuperate. She prepared us by saying that Charlene's condition was likely to get worse for the next 2 days before becoming better.

Both of us were very worried and we decided to stay throughout the night. Des has already brought his office clothes, so he went to work straight from the office in the morning. He couldn't take leave because there was some important work events that he had to be there.

22 Apr 13

In the early part of the day, Charlene was doing quite alright. Her fever has subsided, and she was sleeping soundly in the day.

We decided that we should activated the maid to care for Charlene in the night. I went back home early for tuition whereas Des stayed back till evening to instruct the maid.

Just before Des left the care of Charlene to the maid, the nurse found that Charlene fever came back and they gave her panadol immediately. When Des was on the train home, he received a call from the doctor saying that Charlene appeared breathless and the O2 saturation was bad. The doctor decided to send her to ICU for better monitoring.

21 Apr 13

Charlene's fever was controlled in the morning, but by mid afternoon, her fever shot up to 39.6 degrees. Also, she was not tolerating any of the milk feed. She vomitted her water feed and also whatever little amount of milk she was fed.

We sent her in to NUH immediately. During the taxi ride, Charlene calmed down somewhat but vomitted during the ride. She turned a little blue after the vomitting causing much worry to Des and I.

At A&E, Charlene was screaming at a 'simple' pin prick of her finger for blood test. She never had such reaction before and it is somewhat reassuring to see her cognitive progress.

The A&E did an X-ray and diagnosed her with pneumonia. Also, they noted that her O2 saturation level is low and gave her oxygen immediately.

After some waiting, Charlene was sent to the general ward. The doctors did many examinations, and Charlene keeps crying even though she was very tired and it was obvious that she wants to sleep. In the end, we asked the doctor to gave her some sleeping medication to get her to sleep. Her heart rate went back to normal after the medication was given and she was able to sleep soundly. That night, the 2 of us managed to get some rest in the hospital.

20 Apr 13

Des came back from conference today. It was supposed to be a good day, since he's back.

But during a milk feeding, Charlene vomitted a large amount of milk and phlegm. It came so sudden that I didn't have sufficient time to turn her head to the side. Shortly after that, Charlene started having a fever. We gave her panadol to curb the fever immediately.

13 - 20 Apr 13

Des flew to Cambridge for work. The maid has been of help with the chores and carrying Charlene to stop her from frying.

However, the maid is too soft-hearted and could not see Charlene crying, even during therapy. It will take some time to train her to be able to do exercises with Charlene.

6 - 13 Apr 13 (Getting a maid)

Dez and I have been contemplating to get a maid for sometime. Many people (our friends, relatives, church friends and colleagues) have been asking us to get one to help us with the care of Charlene.

We have resisted getting a maid and have relied on ourselves for 2 years. But my recent hospitalisation and Charlene's continual crying have made us consider otherwise. Especially for the past 2 weeks, both of us have been really tired as Charlene would keep crying in the middle of the night. Both of us couldn't get sufficient rest at all.

On one church event, our church friend found out that a Filipino in our church is looking for an employer.

We interviewed her but we were still hesitant due to financial concerns as well as the potential obstacles we will face with our parents.

After much praying and getting some reassurances, we decided to employ her. We really could not manage Charlene's incessant crying by ourselves alone.

She came just in time before Des flew off to Cambridge for work.

12 April 2013

Finally, Charlene has her music cum physio in school today. It was nice seeing how music motivate Charlene.   She was able to roll towards the direction where the music comes from (with much time and prompts from her PT). While sitting, she was also able to raise and lower her head in response to the lyrics of the song (Music teacher sings "Up..." "Down..").

Charlene started crying when Teacher Lay Oo started stretching her and making her kick her legs in the sky (towards wind chimes actually). Charlene started whining first and then it gradually progressed to louder and rhythmic crying. Tr Lay Oo was very amused. He said that Charlene's crying is like watching drama unfold and got rhythm somemore.

My cute little girl never fails to amaze and surprise people.

11 Apr 2013

Charlene has been more settled (less crying) this past week. However, her biological clock seems to have reversed again. The worst is she cries at night despite being carried. Even carrying her through the night is very tiring. 

Charlene was half awake on the journey to KKH, She was sleeping prior to that. She fell asleep while waiting for the appointment to see the Orthotics once I put her jacket on. The person making the AFO was very grateful that Charlene is sleeping. Cos the last time when we made the AFO, Charlene was crying and struggling to kick her way out of the bed. Basically, clay has to be applied to her feet and calf to make the mould for her AFO. Amazingly, while we were almost done, Charlene's OT, Jo came into the room. I had phoned her a couple of times to try to book an appointment to no avail. She said she had a cancellation of appointment and will be free in 45 mins time. But Charlene is sleeping. Anyway, I told her I will go get medicine at the pharmacy first and tried to wake Charlene during that time. 

45 mins later, Charlene is still sleeping despite mummy trying very hard. Anyway, I went back to Jo and requested that we tried for 5 mins and see if she awakens. Thank God, we managed to wake her! Charlene did well in her sitting, lifting up her head and weight shifting exercises. However, the moment Jo rolled her about on the gym ball, she started crying. Jo stopped and pat her on her back, calming her. And in less than a minute, Charlene stopped crying. Then Jo carried her off the gym ball into sitting position and Charlene cried again. Again, Jo patted her and she calmed down in less than 15 seconds. Jo then did some very slow motion rolling and it was after a few rolls that Charlene realised what was happpening to her. She became upset again so Jo stopped. And almost immediately, Charlene stopped too. Jo was amazed by Charlene's fast reaction. Charlene has always struggled with self-regulation all this while. 

Praise God for the improvement! 

5 Apr 2013

God sent a friend to encourage me today. Despite also being in a difficult situation herself (she also has a special needs child who has neuro degenerative disease), she came all the way in a taxi to pray for Charlene. Charlene was quite cooperative and seemed to like her.

We caught up quite a bit and enjoyed the fellowship. Charlene was also quite cooperative lying on the sofa. We also did oral feeding with her. This clever girl doesn't want to drink cold water but the moment I gave her apple carrot juice, she drank. When it was near time to go to school, I changed her clothes and told her we are going to school and she started crying. So my friend told her to stop crying if she doesn't want to go to school and she stopped almost immediately. I let her rest a while, thinking I might still be able to bring her for her music therapy since it is the last period. An hour later, I told Charlene again we are going to school to see Tr Jac for music lesson and she started crying again. So my friend again told her to stop crying if she doesn't want to go to school and she did and eventually fell asleep on the sofa.

It is the first time in three months since potassium bromide is taken off that Charlene can sleep on her own without the influence of medicine and without carrying. I thank God for sending my friend! God has really blessed our family greatly.

3 Apr 2013

Charlene cried almost throughout in class today for 2 hrs.

She was crying when class was about to start. Then her classmate's grandma came in with her classmate and saw Charlene crying so hard. So she started telling Charlene what her classmate used to be too and Charlene stopped crying. As soon as the old lady stopped talking, Charlene started crying again.

So I said to Charlene, "Oh, I see. U want to listen to gossip. Teacher, do u have any boyfriend?" And she stopped crying.

Then in the playroom, she was crying too even as I carried her. Even the slide that she liked best, she didn't want to play with it. Then her PT came in and started talking to her classmate's parents. Charlene immediately stopped crying and turned her head towards the direction of them.

It is quite cute and amusing that she stops crying because she kpo, wants to hear what other people are talking about.

She was crying almost throughout the whole occupation therapy session. Poor OT always sees a crying Charlene. Then after I came back from the toilet, I found her seated quietly, dozing off on the left thigh of her therapist. OT says that it is major milestone for him. Hahaha.